Dis Breast Cancer Survivors - GAGWTA!

[MinnieM3]

Busy day today! Checked with doc and re moved a stubborn stitch that was causing an area to be irritated and said the gross incision openings are "coming along fine" (whoppee!)

Welcome to LoveWDW and Laurajean..... sorry about your news. Keep us updated!

 

[Shugardrawers]

Hey ladies, sorry I haven't posted in forever. I've just been feeling rotten and don't Dis very much anymore. The chemo makes me feel like I have morning sickness 24/7. I'm trying not to let it change my life too much. I try to keep the house (not succeeding very well), walk Petey, do fun things with DSis and her kids etc. Yesterday we went to Busch Gardens Williamsburg. It was fun and I tried not to over tire myself by using a wheelchair but by 7pm I was exhausted and dying to go home. I always look forward to that funnel cake we get on the way out. It didn't even smell good to me. Nothing looks or tastes good except Paul Newman's salsa and baked tortilla chips So far all my blood work is pretty good although I my iron was kind of low which explains the tiredness. Anyway, I saw a Neuro MD about some leg pain that's been bothering me forever. We've tried several different treatments and they haven't worked. The pain is getting worse and the MD is reluctant to do the surgery he says I need because of the chemo. I do understand but I just want to do whatever it takes to get rid of the leg pain ya know? I've also had a toothache for several days and need to see a dentist. I'm worried he won't want to treat it because of the chemo too. Should I be concerned about that? Anyone had dental work while going through chemo? What about unrelated surgeries?

 

[NHAnn]

Laurajean.........((((hugs)))))) DCIS was my diagnosis to...I got the news May 10. Options for me were mast and no radiation or re-excision (lumpectomy) with radiation. Tamoxifen recommended after whichever option chosen...but I am enrolled in a clinical trial I will be getting either Tamoxifen or Arimidex. Haven't started meds yet, will wait til after rad is done. TODAY is radiation #11 of 25 As others will say...right NOW in your journey is the hardest part. PM me if you like...I have to run to work this morning, will talk to you later OK???? YOU WILL BE FINE, you CAN get through this !

hi alll....Prayers and hugs for all who need it!!

 

[laurabelle]

Linda- I'm glad the tests are normal, but sorry this mystery pain is still there... Thanks for getting more info on the immunostains too!

MinnieM3- Sounds like things are healing well!

Shugardrawers- I'm sorry you're feeling so bad. I didn't do either during chemo...hopefully someone here will be of help. You made me smile about the salsa and chips though! Isn't it funny the foods we just cannot tolerate during chemo and the quirky things we like!?! I had to have mashed potatoes and square pizza! And as a Marylander, even when I had horrendous mouth sores, I could still eat a crabcake!

I'm leaving for WDW in the morning ladies! I can't wait!

 

[Cruise04]

Good morning everyone. I just wanted to check in and read and see how everyone is doing. Laurajean - I'm keeping good prayers going for you (as I am for everyone) but extra ones right now for you.

I have had a hectic week so I haven't had much chance to talk to my friend whose mom was waiting to hear if she had pancreatic cancer. They did a biopsy surgery on Monday and they were told that her abdomen is filled with cancer and it is pancreatic. They are giving her months (I pray she is either gone before Christmas or can hold out until after Christmas but I know life is too unpredictable to hope that). They will meet with an oncologist today at 4 to see if there are any options. I'm hoping for something for them. The cells that they found were too small to be seen on scans, which I know well about this as we had been told this by a doctor my mom saw at University of Wisconsin-Madison hospital. He did tell us that it takes 3-5 years (and I'm not trying to scare anyone) for cells to be large enough to be seen on scans. This was the case with my mom - her blood work showed signs that the cancer was back but they all the scans were clear - for a year!!!! After she passed we did an autopsy because I wanted to know and the autopsy showed she was absolutely filled, all throughout her body, with cancer cells - most of them the size of a grain of salt.

I wanted to say thank you for the prayers and thoughts you had been keeping for Eva's mom. I do appreciate and she does as well (I told her about you guys and she almost cried).

Laurabelle - HAVE A GREAT TIME AT WDW!!!!!

Everyone have a good weekend and rest of the week (it's "Friday" for me at work).

 

[snappy]

This was the case with my mom - her blood work showed signs that the cancer was back but they all the scans were clear - for a year!!!! After she passed we did an autopsy because I wanted to know and the autopsy showed she was absolutely filled, all throughout her body, with cancer cells - most of them the size of a grain of salt.

I guess this is why we have to get blood work every 3-4 months. It sounds like the scans are really only useful after it is pretty widespread. However, I think they do scans initially to get a base line as well.

Thanks goodness for the blood tests.

Sorry you are reliving your experiences with your Mom but I bet your friend and her Mom are needing the support from someone who has been on the journey (with your Mom).

 

[Disney Debbie]

Shugardrawers - I had my teeth cleaned during chemo - but didn't need any further work. Hope that helps some!

I would think if you have a cavity or something they would give you antibiotics - you would be worse off if it turned into an abcess or something so I'd think they would do the work that is necessary. While the leg pain is bothering you - I can see why they wouldn't want to do any surgery that wasn't life threatening until you were done with chemo because they don't want to risk introducing any infections.

Either way - I'd discuss it with the oncologist AND the dentist.

 

[Pea-n-Me]

He did tell us that it takes 3-5 years (and I'm not trying to scare anyone) for cells to be large enough to be seen on scans.

Well that just made my day



Oh well - at least I know what the discussion at my next oncology appt will be...

 

[Cruise04]

I'm sorry guys - like I said I was trying to depress anyone!!!! But the scans are good. You could have a spot that is confined to one area - that is possible, especially for first time diagnosis. Now remember, this was with her second diagnosis, not the first. I think we all have cancer cells probably growing in us somewhere but we never know until they are large!!! I just try not to think about it!

I did want to comment on the question about surgery and dental work while on chemo. I do know, the second time my mom was on chemo she had a baker's cyst removed from the back of one of her legs. Not a problem but that was a pretty easy day surgery. The one problem she had was from the pain pills they gave her - she was really sick for a few days. Mom also had crown work done and teeth filled during the first round of chemo. No problems. She did, however, have an abcessed tooth one time too - ended up needing a root canal. That was with the first round of chemo.

With the second round of chemo she had a terrible case of Thrush - horrible case. It was very hard for her to eat because it made all of her food taste horrible. But she ate because she had to. But I remember nothing tasting good to her.

 

[JoannaOhio]

I think we all have cancer cells probably growing in us somewhere but we never know until they are large!!!

I agree that most people probably have cancer cells in their body, but their healthy immune systems are able to keep the cancer cells under control. It's when the cancer cells grow out of control, killing healthy cells, that they cause problems. My oncologist stopped doing blood tests when I reached the 8-year mark. Even then, the protein being monitored wasn't at zero - but it was at a low enough level to not be a threat. (It is my understanding that the blood tests don't measure cancer cells, per se - but the proteins that cancer cells emit.)

 

[Pea-n-Me]

Cruise04, I'm just messin' with ya!

 

[LoveWDW]

Thank you all for the kind welcome!

Shugardrawers- I am very sorry that you are feeling so poorly. My prayers and HUGS for you!

 

[Laurajean1014]

How does everyone's DH handle the news of cancer, surgery and radiation/chemo, etc.....

My DH is not handling it well at all. I had a cry fest the entire day.....

It was awful. If I know how others handle it, it maybe easier for me to do the same.

 

[Shugardrawers]

How does everyone's DH handle the news of cancer, surgery and radiation/chemo, etc.....

My DH is not handling it well at all. I had a cry fest the entire day.....

It was awful. If I know how others handle it, it maybe easier for me to do the same.

DH was in complete denial. I try very hard to keep up with my old life but when I say I'm tired or don't feel well he doesn't understand why. He kept saying I would be fine in a few weeks. The Dr's beg to differ with him. Anyway, for all our married life I've said we needed life insurance on me. DH said he didn't need/want any insurance money. Out of the blue yesterday he said he wanted to get a policy on me. Who in the heck is gonna insure me now??? NO ONE!

 

[Pea-n-Me]

Laurajean, everyone handles these things differently and at their own pace. There are no hard and set rules about how to react. If your DH is upset that's ok, he should be allowed to express his feelings. As he learns more he'll feel better.

Our own individual life experiences drive these feelings. Too often people stifle them because they don't know it's really ok; they feel they should be "strong" or "positive" and that's when it becomes a burden, they don't let them out. It's natural to feel scared when a diagnosis like this occurs and you don't know much about it. Hearing you have "cancer" is the one thing people fear their whole lives. I take care of people who are dying of heart failure who say to me they'd rather have that than cancer.

News like this is akin to going through a grieving process (even though you're not "dying" the process is the same): shock, denial, anger, bargaining, depression and eventually acceptance - everyone goes through these stages differently. You grieve the loss of your "health" (and even look at your future differently) when suddenly things aren't the way they've always been - individually, as a couple or as a family. It does make it a bit harder on you because you have your own issues to deal with and you feel like you have to be there for him too when you're the one with the problem! Give it a bit of time and just carry on the way you need to, he'll follow your lead.

A crisis cannot last more than three weeks, it has to resolve itself, remember that. So the way you and he feel today is different than how you will feel 3 weeks from now, but it may run the gamut of emotions (or none at all) between here and there. We see this type of thing in the hospital a lot.

Tammy, didn't you have this happen with your husband when you first got news of your recurrence?

 

[Shugardrawers]

Dh has been in complete denial until just yesterday. At first he was very upset, insisting he come home to nurse me. Then after I convinced him to stay where he was he just started denying it all. Now he begs me to eat, threatens to tell my Dr if I don't. Now all the sudden he thinks I need life insurance. I can't keep up with his mood swings!

 

[LoveWDW]

How does everyone's DH handle the news of cancer, surgery and radiation/chemo, etc.....

My DH is not handling it well at all. I had a cry fest the entire day.....

It was awful. If I know how others handle it, it maybe easier for me to do the same.

My husband remained calm. I told him that I knew I would have to talk and talk about the situation, and he nodded, and listened. He listened when I needed to go over things again and again, when I expressed my fears, when I cried. He assured me that he would love me with or without breasts.

The downside to his behavior was that he did not comprehend how physically weak and ill I was after the long reconstruction surgery. I could only stand up for a few minutes after coming home, otherwise I would become faint. After a few days, he felt that I should be up and fixing meals and doing housekeeping instead of lying down so much. I read above of another husband who didn't understand, so it isn't only my husband. If he hasn't experienced something, he doesn't understand it. He did not make any mention even once of the huge expense, even after insurance, for the reconstruction, and the time he had to take off work to drive me to doctors. So even though he had trouble understanding that I needed time to recuperate, he was there for me and he was a comfort.

 

[NHAnn]

Laurajean....((hugs))
Everyone's different...so I imagine everyone's DHs/SOs are different too. Mine was very calm, very positive, although during the couple of weeks between diagnosis and the re-excision he got that gaunt/stressed/weary look around his eyes. He has a BS in Civil Engineering,served in the Army after college and went on to get an MBA later in his career. So he's a technical person as well as a thinker and organizer and manager. Anyway, he'd say things like "it's good that they caught it"..."we're going to get through this" "I'll support whatever treatment decisions you make" "You can do it.etc .." until I had a private mini-meltdown a few days after diagnosis. I was reading way too much and scaring myself. I then plunked him down with Susan's Love's book and made him read the whole section on DCIS and when he was done I said "OK, NOW do you see why I'm a basket case and I don't know what to do!!???" And then I told him I needed him to be a little more "involved", emotionally...not that he wasn't involved, I finally managed to explain to him that I didn't just want him to be a rah-rah person, I wanted him to acknowledge and share his own fears and worries as well as mine ....he was already being a great sounding board for decision making. I got him a book at my support center that was written by a couple of men, survivor's husband's, as a guide for other husbands. I think he took it to heart.
One of the things I found difficult was making treatment decisions. The ladies on this thread, more than once, have reassured me:
Whatever you're thinking or feeling, it's NORMAL. You just have to do the best you can, each day. You'll find your way through this. You'll have ups and downs. You'll know what's best for you, then you just have to move forward. I posted once a month or two ago..."Does the feeling This can't be happening to me! ever go away?" I was told that it eases once you have a plan...you're more in control...you're doing something, your treating it, you're BEATING it!! It's true. Your life is changed...but believe it or not there are a LOT of positives to the situation. My DH's cousin (a Survivor also)
gave me a card in which she wrote a nice note ending with:
"Have Faith! Have Hope! Have Courage!" I wish that for you too! It is scarey and hard times Laurajean, but ALL my doctors have stressed that DCIS itself is NOT life threatening. My surgeon says DCIS is non-invasive cancer cells, the radiation oncologist called it pre-cancer as someone else mentioned. You can take as much time as you need to make your treatment decision...well...not months obviously, but a few weeks at this stage is not as critical as it is with an invasive cancer.

We're here for you...we laugh and cry and support each other

 

[Shugardrawers]

Whatever you're thinking or feeling, it's NORMAL.

As long as we are on the subject of normal, did anyone experience feeling like if this is it I hope I die soon? Not that I want to die, just that my odds are so bad that I'm just wanting to get it over with. I'm afraid of what's to come. I don't want to waste away and die in pain. I'm starting to feel lousy and I don't want to feel worse. I don't want to put my family through this and I don't want to put myself through it. I'm not suicidal, I just want it over with one way or the other. Please tell me this is normal!

 

[Dan Murphy]

Laurajean, know you are in my prayers. Do hope all goes well in the days/weeks ahead, I am sure it will.

's/prayers for everyone here.